Kaysee Hyatt's Why




Kaysee Hyatt suspected something was wrong with her infant daughter, Addison, from the time she and husband Trapper brought her home after her December 2012 birth. “She was extremely fussy, had a hard time eating and sleeping and her left hand was always clenched, plus she never played with toys using her left hand,” Kaysee said.

But it would be six months before her suspicions were confirmed — a MRI showed that baby Addison had had an ischemic stroke at some point during the 28 days before or after her birth. No cause was found.

Stroke happens in about one in every 3,500 births — and the consequences may be harsh and long term. For instance, it is the leading cause of hemiplegic cerebral palsy, or paralysis on one side of the body caused by a brain injury, which Addison has. She has also experienced sensory impairments, speech delays and a seizure. “Thankfully it was only one, but her risk is always there as with any brain injury,” Kaysee said.

The Hyatts got Addison into intensive therapy to help her learn to use her left side, speak and cope with other challenges resulting from the stroke. Even though no cause was ever identified and they were doing all they could to help her recover, Kaysee still carried guilt that she had somehow failed her daughter. She needed support.

“When we left the hospital after being told of our daughter’s stroke, there were no local resources or pediatric stroke support groups in Renton,” she said. “We had no idea how common this was.” An Internet search turned up three online groups — CHASA, the International Alliance of Pediatric Stroke and Brendon’s Smile (now known as World Pediatric Stroke Association) — all organizations dedicated to awareness and information. “Social media became my saving grace to connect with others,” she said. “There I began building relationships with local families. I was amazed at how many pediatric stroke families there were here in the Pacific Northwest and that’s when the idea to establish something local began to take root.”

Kaysee formed the nonprofit Pediatric Stroke Warriors (PSW) to connect other Pacific Northwest families with support and resources. In the beginning it was mostly by word of mouth that families connected with PSW. As they grew, so did their supporters, connections and visibility. “We now host an informational website, social media pages and have an established Stroke Fund at Seattle Children’s Hospital to support financial aid to impacted families in our region,” Kaysee said. This past January they began providing their “Warrior Bag” and “Brave Box” to support any newly diagnosed family or a child recovering from stroke. The Warrior Bag includes The Pediatric Stroke Patient and Family Guide, published by the University of North Carolina Comprehensive Stroke Center and the International Alliance of Pediatric Stroke. The Brave Box is assembled specifically for each child based on their age and interests in an effort to make their day a little brighter and their time in the hospital or during an appointment more positive.

Beyond support, PSW works to bring awareness of pediatric stroke, through events, public speaking opportunities and distributing educational materials. “It sucks the air out of the room when you tell people Addison had a stroke, but what I love is that you can see that she’s okay and she’s a fighter,” Kaysee said. “It’s definitely scary, but it’s not anything to pity her over because she’s doing amazing.”

In 2015, Kaysee was recognized by the American Heart Association/American Stroke Association for her efforts as a Stroke Hero. In October 2015, the PSW families took part in the AHA’s 2015 Puget Sound Heart & Stroke Walk, walking in honor of, and awareness for, children impacted by stroke.

In her presentations Kaysee always talks about F.A.S.T., but she also acknowledges that delayed or missed diagnosis of stroke in children is common. In newborns, the first symptom of a stroke is often seizures involving only one arm or leg.

“Having a daughter who suffered a stroke at birth, knowing that stroke can impact children of all ages and that it has already impacted so many, is what led me to do more,” she said. “That simple reality changed my life. I hope that sharing Addison’s story offers hope. That is my why.”

Everyone has a reason to live a longer and healthier life.

TELL US YOURS.

Pediatric Stroke Warriors produced a beautiful video to raise awareness of stroke in children. (Courtesy of Pediatric Stroke Warriors)

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.

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Pediatric Resources

Colorado Pediatric Stroke: Parent Support Group

Offers local monthly support group meetings to provide support, education, and advocacy for families impacted by the range of outcomes of all types of pediatric strokes.

Pediatric Stroke Warriors

We are dedicated in our mission of building community awareness for pediatric stroke and hope for impacted children and families throughout the Greater Pacific Northwest Region and beyond.

Share the Strokes Can Happen At Any Age infographic

Children's Stroke Foundation

The Children's Stroke Foundation has a simple mission: to educate doctors throughout the United States about Pediatric Stroke. Their model program will teach, and be used as a resource for, other hospitals while implementing their own programs.

Children's Hemiplegia and Stroke Association

The Children’s Hemiplegia and Stroke Association, CHASA, is a nonprofit organization founded by parents of children with hemiplegia in 1996 to provide information and support to families of children who have hemiplegia, hemiparesis, or hemiplegic cerebral palsy.

International Alliance for Pediatric Stroke (IAPS)

The International Alliance for Pediatric Stroke (IAPS) was created to unite pediatric stroke communities around the world. IAPS provides knowledge, hope, resources and the connection between families, medical specialists, researchers, healthcare providers and anyone affected by pediatric stroke. Our mission is proudly supported by leading pediatric neurologists and all of our information is approved by the physicians on our board.

Bellaflies Foundation

The Bellaflies Foundation is a 501(c)3 non-profit foundation that is dedicated to “Making a Positive”. Their mission is to spread pediatric stroke awareness, support children's hospitals, and work to advance pediatric stroke research in medicine and testing worldwide.

Sickle Cell Disease Association of America

The SCDAA's mission is to promote finding a universal cure for sickle cell disease while improving the quality of life for individuals and families where sickle cell-related conditions exist.

Pediatric Stroke Program at the Children's Hospital of Philadelphia

The Pediatric Stroke Program at CHOP offers pediatric stroke awareness through their extensive family support program. They provide a multidisciplinary team approach in a hospital setting. The pediatric stroke program includes community outreach, meetings/conferences, assistance with the child’s education plan and quarterly newsletters.The hospital is located in Philadelphia, but anyone worldwide who is interested in their hospital services or getting involved in pediatric stroke activities is welcomed.

I am Jayden Foundation

I Am Jayden Foundation's mission is to spread awareness about pediatric stroke and become a source of funding for organizations/foundations/survivors who are associated with pediatric stroke. Funds go towards helping families or organizations who need financial assistance to better the lives of pediatric stroke survivors.

Brendon's Smile

World Pediatric Stroke Association (formerly known as Brendon's Smile) provides opportunities to advocate and raise awareness among the general public locally and online.
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Featured Kids

Kaysee Hyatt's Why

Kaysee Hyatt suspected something was wrong with her infant daughter, Addison. But it would be six months before it was confirmed Addison had had a stroke. After getting invaluable support via social media, Kaysee formed the nonprofit Pediatric Stroke Warriors to connect families in the Pacific Northwest.

Developing Resilience: A Mother's Perspective

“Your child has had a stroke.” Those words are hard to fathom — and just the beginning of a long road to recovery. It requires entire families to adjust to many challenges — and not just those faced by their child.

Profiles of Adolescent Survival

Shellby Watts and Erica Singleton both experienced strokes as children. Now 16 and 35 respectively, they reflect on their experiences and share how they’re doing today.

Keep a Good Spirit!

Her husband had a devastating stroke and, later, her 9-year-old daughter also had one due to a PFO (a hole in the heart), Eva has an important message for all stroke survivors and their families.

Stroke in Adolescents

Children’s brains are developing and may be more plastic than those of adults, so therapy is helpful — and as with adult survivors, more is better. Motivating them to do their therapy, however, may be a challenge.

A Mile in Her Own Shoes

I finished my first official mile in more than seven years. Seven years might be a long time without running a mile, but time didn’t matter to me. I was just happy to meet my goal. At 16, I had a hemorrhagic stroke from an AVM (arteriovenous malformation), leaving my left side weak.

Gracie Doran's Why

At the age of 10, Gracie Doran had a stroke due to cavernous hemangioma. But that hasn't kept her from doing what she loves. “Dance is my passion in life,” Gracie said.

A faster way to diagnose stroke in kids

An emergency room rapid response plan for children can help diagnose stroke symptoms quickly, a new study has found.

Parents Experience PTSD After Child's Stroke

Parents of children who have had a stroke can experience post-traumatic stress disorder (PTSD), and the children show signs of clinical anxiety.

Four Kansas City Teen Stroke Survivors Graduating Together in 2015

In the fall of 2011, Abby Anderson, Blake Ephraim, Madeline Mudd and Molly Ogden were among several thousand freshmen starting high school in the Kansas City area. Then came a traumatic series of events, all in a two-year span. Each suffered a massive stroke.

Tedy's Team Turns 10: A Stroke on the Ice

After homework, she didn’t watch TV or play video games, she practiced her stick handling in the driveway or cellar with a rubber ball and hockey stick. People began to refer to her as an "Olympic hopeful." All that changed when 12-year-old Jamie had a left-brain ischemic stroke on Aug. 9, 2009.

Dr. Rebecca Ichord Explains that Stroke Can Happen at Any Age

The International Alliance for Pediatric Stroke and the American Heart Association/American Stroke Association are teaming up to spread pediatric stroke awareness. Here, Rebecca Ichord, M.D., pediatric neurologist at Children’s Hospital of Philadelphia, shares why it’s important.
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

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Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

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Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!